May 2010

The Patient Advocate regularly provides overviews of ME/CFS conferences and events. Here he provides an at times hard-hitting take on the latest Invest in ME Conference. Thanks to the PA for his years of communicating with the ME/CFS Community. Check out his excellent blog here.

Here is my report from the Invest in ME conference in London that took place on May 24, 2010. This report is my attempt to communicate to others – to those patients who could not attend (including my daughter) – what I saw and heard. I am aware that this report reflects my own bias.… Read More

Chris, the Patient Advocate regularly provides overviews of ME/CFS conferences and events. Here he provides an at times hard-hitting take on the latest Invest in ME Conference. Thanks to the PA for his years of communicating with the ME/CFS Community. Thanks for allowing us to print his blog. Check out his excellent blog here.

Here is my report from the Invest in ME conference in London that took place on May 24, 2010. This report is my attempt to communicate to others – to those patients who could not attend (including my daughter) – what I saw and heard.… Read More

Our Clinic has treated hundreds of people who are now living normal lives

Background: Dr. Lerner had quite a career before CFS. A check of his research record revealed over five decades of infectious disease work focusing on Coxsackie virus, herpes simplex virus, pseudomonas, interferon, Staphylococcus, Mycoplasma, enteroviruses, myocarditis, etc. A contributing author to one of the seminal works in the medical field – “Harrison’s Principal’s of Internal Medicine” – he’s published over 150 papers over the past fifty years.

In 1986 he began having troubles with dizziness and severe fatigue.… Read More

XMRV is…is…..is….There! – Yes, someone actually found XMRV. (gasp!). They weren’t looking for it in the blood or in the prostate tissue or in CFS patients and no, it wasn’t a US Lab that found it, it was a German lab remarkably enough but after months of no positive results it was remarkable finding…XMRV appears to be alive and well in Europe, and, of course, if it’s there it’s probably everywhere.

This German team lead by Dr. Fisher looked for XMRV in respiratory secretions – a highly targeted bodily fluid by researchers, no doubt, because of worries about XMRV’s infectious nature.… Read More

The crew at the Phoenix Rising Forums has been busy. Rrrr – went so far as to snag Dr. Coffin, one at the top retrovirologists in the country, and ask him some questions about XMRV.

Tracking XMRV Down - What is he and Tufts University doing on XRMV? – Dr. Coffin is looking far, and has not yet found, the exact mouse virus that gave birth to XMRV. He’s working with Dr. Huber – who’s also studying endogenous retroviruses in CFS. Dr. Coffin seems to be be doing a bit of backchecking on XMRV. We knew that it was REALLY close to a mouse virus and he said he was checking to be sure the XMRV really is in the human DNA and is not from mouse droppings (ie is a contaminant).… Read More

I thought I would follow up, with where things are at, after such a downward spiral last week.

Thank you to all who reached out, private messaged me and so forth. I know it may seem inappropriate to talk about menstrual cycles since there are so many men on here, but I feel that I want to set it free; set it free what it is like not just to have CFS, but what it is like to have CFS and hormonal issues. I want it on record what it is like to have CFS and then go into perimenopause.… Read More

Most states don’t have a statewide CFS organization let alone one that puts on conferences, writes comprehensive CFS manuals, provides high school and college scholarships, advises school on pediatric issues and more. In short, the ME/CFS patients in New Jersey have somehow managed to create a viable, proactive organization that has been able to influence state practices. How have they been able to do it when so many others have failed?
It’s no surprise that when PANDORA went looking for a place with the political support to build a Neuroendocrine Immune Center they ended up in New Jersey.… Read More

“My mild-mannered, sweet, school-teacher wife just lit into me with some language that would make a sailor blush!” R.S. said, shaking his head in dismay. He was referring to his wife Leona, a fellow patient here at the clinic getting Ampligen, and he was beside himself, still stinging from the string of expletives she had just dispatched his way.

I had met R.S. briefly a few weeks prior, when he and Leona had first arrived at the clinic to start her on the Ampligen protocol. She was a petite, lovely woman, and obviously sick, but she still made an effort to be cordial.… Read More

The main subject – the CFSAC Charter was not the most enthralling subject – but it is a critical topic if the Committee is going to make a difference and Dr. Wanda Jones should be congratulated for thinking strategically and devoting time to trying to get the Committee on more solid ground.

Dr. Koh Arrives - Assistant Secretary of Health Dr. Koh made a surprise appearance at the beginning of the session- the first time in several years that has happened. The last Assistant Secretary of Health to show up was Dr. Agwunobi who seemed passionately interested in chronic fatigue syndrome – he was very good at saying all the right things – but after a year or two on the job without much impact on ME/CFS he left the federal government and joined Walmart.… Read More

The IACFS/ME did a very interesting thing by inviting Dr. Mikovits to answer questions from their members. Dr. Mikovits must have known she was going to get some tough questions and she did.

The Tricky Immune System - The first question illuminated what a complex process tinkering with the immune system is. Andrew Bokelman essentially asked -if you give CFS patients something (such as a neutraceutical) that activates the immune system – causing natural killer cells to increase – if those natural killer cells are infected, as has been reported, with XMRV, aren’t you just spreading the XMRV infection?… Read More

I never liked report cards as a student, but since today marks the completion of 14 weeks on Ampligen, signifying that I’ve just passed the quarter-mile mark, I thought I’d give you an update on my progress, by way of some mid-term grades. After having 28 infusions of this amazing “experimental” drug, here are the things that have and have not improved to date. Grades are based on the typical American system, with A being best, and D’s and F’s being worst.

Things that have improved on Ampligen:

Appetite – A+ This was the very first thing I noticed that Ampligen affected, from the very first day on the very first drip.… Read More

I was working for a non-profit organization I went home at lunch to do the laundry. When I got back to work it took me ten minutes to get out of the car. I barely got into my office and then I collapsed and someone had to take me home. Four months later I had to stop working.

Oddly enough my roommate ended up with the same problem and we both went to the same clinic but we had different doctors.… Read More

A million and a half dollars, two hundred fifty patients and seven years later the UK government’s best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly aren’t out of the woods, but they can breathe a sigh of relief that they dodged a massive bullet.

UK Government’s Big Hope – The nurse based CBT/GET-like program (called pragmatic rehabilitation”) under review was aimed at finding a way to deliver these therapies at reduced cost to masses of CFS patients. Picture hordes of nurses fanning across the country, lifting ME/CFS patients out of bed and back into the workplace, with sweet words of behavioral therapy.… Read More

It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.

“What exactly is wrong with you?” they ask, innocently…not knowing that their “casual” remark has ignited every synapse in your brain and tensed every muscle in your body into an emergency-level “fight/flight” response.

How should I answer that? Because the disease we battle has not received the “press” or publicity of other better known infirmities, and is not as intuitively obvious as having one leg missing, the answer we give is not all that easy to come up with, and often provokes some strange responses.… Read More

A million and a half dollars, two hundred fifty patients and seven years later the UK government’s best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly aren’t out of the woods, but they can breathe a sigh of relief that they dodged a massive bullet.

The nurse based CBT/GET-like program (called pragmatic rehabilitation”) under review was aimed at finding a way to deliver these therapies at reduced cost to masses of CFS patients. Picture hordes of nurses fanning across the country, lifting ME/CFS patients out of bed and back into the workplace, with sweet words of behavioral therapy.… Read More

Dr. Peterson Leaves the Building (er Construction Site) – Our putative ‘April surprise’ turned out to be a real shocker. Six months prior to the WPI opening in its new facility the WPI announced that he was leaving the Medical Director’s position at the WPI and returning to practice at his clinic. Both parties have remained completely silent on the move – the WPI’s Facebook site posted something and then took it down and Dr. Peterson has not posted any more statements. (Transparency is not the order of the day this time ( :)).

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.